Fundraising for Spinal Muscular Atrophy and other diseases

In diseases that are as devastating as Spinal Muscular Atrophy and others, fundraising can quickly become the priority for those who are  newly diagnosed. In what has become a highly competitive arena, new tools are created to attract new donors. At conferences across the country specific sessions are held to teach families how to become more effective in their fundraising ventures. These are all very important components of any disease community. These programs help to advance research and specific support programs of the various organizations.

In our urgency to find a treatment for this disease many families overlook the importance of fundraising for your family first. While we patiently wait for a beneficial treatment for our kids, it is important to maintain the ability to provide our children with the best care  possible. While many organizations offer assistance in defined areas of our disease, the vast majority of our children’s needs will never be met. Organizations simply do not have the means to keep up with the demands of the community and tend to focus on one specific area of support that they can provide effectively. The only way to ensure your family is prepared for the journey ahead is to have a “Nest Egg” for medical needs. Creating a medical fund for your child from the start is critical. Many newly diagnosed families have reached out to us with the urgency to fund research. I generally advise them to fundraise for their child first and once they feel comfortable with what they have put aside, to then start to look into funding research. Realistically I would guess well over 100 million dollars has been invested in SMA research and there currently is no treatment. Parents should never feel guilty about investing in their child’s future first.

This is just a small list of things that may not be covered and their associated costs:

  • New Conversion Van with lift – $50,000-$100,000
  • New Power Chair – $35,000 -$50,000
  • Moto Med – $5,000 – $8,500
  • Cough Assist (back- up) – $3,500 (cost from SMA Supply retails $6,500)
  • Bipap/Vent (back-up) – $2,500- $18,000
  • Pulse Ox – $1,200 (Massimo Rad 8 )
  • Traveling expenses to see an SMA Specialist

This is just a tiny list which could be expanded to include hundreds of things that a parent may have to purchase for themselves. Equipment like Ipads and apps which are used to stimulate our kids are often overlooked as well. The single area however, that I believe most families are least prepared for is the actual clinical trial that we all covet. In some cases participation in a clinical trial will require that the subject remain in close proximity to the trial site. If your child was accepted into a trial, is your family prepared to take on the financial burden of living in another state for 5-6 months? While you are away do you also have the ability to pay your expenses at home? These are very important things for families to think about. It is important that a “Nest Egg” is created prior to the onset of donor fatigue. If you wear out your donor base funding research, it may be quite challenging to fulfill the needs of your family later on.

There are many groups and families who are working tirelessly towards finding a treatment and an eventual cure for SMA. It was important  to shed light on a topic that we have not previously  broached. Initially……. future medical needs are not forefront in the mind of a newly diagnosed family who has received such a devastating diagnosis. There is a growing list of children who are living longer and changing the natural history of SMA. Our goal is to make sure the newer generation of families are best prepared for the journey that lies ahead.


  1. Your post makes an excellent and often overlooked point. SMA children often have many needs that are not covered by medical insurance, such as a van and van modification. Even health insurance co-pays can really add up, especially if your insurance charges one co-pay for each doctor. It’s not unusual for an SMA child to need 5 doctors in different specialties. This is very sound financial advice.

  2. Jen Peters says:

    The very first thing I wanted to do when we heard the diagnosis was to help fund research, just like you said. But, Vince, you were the ONLY person to tell me to raise money for our family first. Bringing this up is just another reason why so many people support you, Catherine, and the Sophia’s Cure Foundation! Thank you!

  3. Teri Taylor says:

    Once again, Vinny, you bring up a subject that is SO important. Another cost to families is when one parent has to give up their job in order to stay home to take care of their child. This is a HUGE cost, also, that families should consider.

  4. Mary Bodzo says:

    Wonderful advice for families! Also shows that your hearts are absolutely in the right place and that your most heartfelt desire is to truly help families suffering with sma. God’s blessings to you Catherine and Vinny!

  5. I wish I could do more. I have basically nothing saved for Makenna’s needs and no help what so ever to fundraise for us let alone the cure. I would donate everything I have if I could. I am amazed by your family and your dedication and abilty to do what you do.

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